Understanding patient views and experiences of the IDENTIfication of PALLiative care needs: a qualitative investigation (IDENTI-Pall)

Problem

Primary healthcare teams deliver the majority of palliative and end-of-life care in the community. There is growing interest in the use of palliative care identification tools in primary care to identify patients with unmet palliative needs, including searches of electronic patient records. Early identification of palliative care needs ensures patients are given a voice, space, and time to be involved in the collaborative decision-making process and describe their wishes.There is no previous research into the experiences and perspectives of patients about the nuanced process of identifying palliative care needs. This research will address that gap and inform future practice by increasing understanding of the views and perceptions of patients about this identification process and the impact it has had on their care.

Approach

In order to obtain in-depth, detailed insights into patient experiences, 10-12 qualitative, semi-structured interviews will be conducted with adults with advanced serious illness, identified via GP practices across Sheffield. Participants will be aware of their palliative care needs through discussions with their primary care team and/or will receive specialist palliative care. Thematic Analysis of interview transcripts is underway, taking an inductive and iterative approach. PPI has, and will continue, to inform each stage of the research, including the design of participant information resources and data analysis.

Findings

This study is a work in progress, with completion expected in June 2022. From the interviews completed thus far, it is clear that patients have very diverse experiences of the identification of their palliative care needs. There are three emerging, inter-related themes that are relevant to current clinical practice: 1. Sharing prognostic uncertainty: A lack of honest and open communication surrounding prognostic uncertainty can prevent a shared understanding of the potential benefits of palliative care.2. Compassionate communication: Face-to-face interactions are important to discuss palliative care needs, alongside the time and space to process the information and ask questions.3. Benefits of identification in primary care: A palliative ‘label’ improves access to primary care teams. Frequent check-ins with GPs are highly valued by patients approaching the end of their life.

Consequences

Themes generated from the qualitative interviews will be used to develop patient-centred recommendations for clinical practice and policy in relation to the use of palliative care identification tools. One of the planned dissemination outputs is a guide to communicating with patients following identification of their palliative care needs. This guide will be derived from patient experiences to ensure that the use of palliative identification tools leads to meaningful conversations with patients about their care.